Rainbow Babies: Pregnancy After Losing a Child to a CHD (Remastered)

"Rainbow babies" are babies who are conceived after women have experienced a stillbirth or after a baby has died. We will discuss the process one woman has decided to go through in order to have her own rainbow baby, who is helping her and how others who have lost a baby to a congenital heart defect might find hope in giving birth to a healthy baby.

What are the concerns a mother might have in getting pregnant again after having lost a child to a congenital heart defect? What is the likelihood a woman will have more than one child with a congenital heart defect? How do women deal with infertility after having lost a baby to stillbirth or death? These are some of the issues we will address during this episode.

Transcript

spk_0:   0:03
Welcome

spk_1:   0:06
to Heart to Heart with Anna, featuring your host Anna Dworsky. Our program is a program designed to empower the CH D or congenital heart defect community. Our program may also help families who have Children who are chronically ill by bringing information and encouragement to you in order to become an advocate for your community. Now here is Anna Gorski.

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Today show features two moms, Sherri Turner and Ashley Halligan, both mothers who experienced the devastating trauma of losing a child to a congenital heart defect. And the incredible euphoria is giving birth to a rainbow baby. Please enjoy today's encore presentation.

spk_2:   0:52
Welcome, Friends. Heart to Heart with Anna, a show for the congenital heart defect community. Our purposes. Twin power members of our community, with three sources report at because the information the show is Rainbow Babies pregnancy After losing a child to a congenital heart defect, Rainbow Babies babies who are conceived after women have experienced a stillbirth or after a baby has died, we will discuss the process one woman has decided to go through in order to have her own rainbow baby who was helping her and how others who have lost the baby to a congenital heart defect might find hope and giving birth to a healthy baby, according to the Children's Hospital of Philadelphia, would fight a congenital heart defect, or C H. D is a heart problem, which is president birth caused by improper development of the heart during fetal development and the majority of the instances when a baby is born with a PhD, there is no known reason for the heart to have formed, Improperly noted. Some types of PhDs can be related to an abnormality of an infant chromosome about 5 to 6% single gene defect, about 3 to 5% or environmental factors about 2%. In 85 to 90% of the cases. There is no identifiable cause for the heart defect, and they were generally considered to be caused by multi factorial inheritance. Multi factorial inheritance means that many factors are involved in causing a birth defect. The fact is, they usually both genetic and environmental or a combination of genes from both parents, in addition to unknown environmental factors, produced the trait or condition in the general population. About 1% of all Children are born with a PhD. However, the risk increases when either the parent has a PhD or when another sibling was born with a PhD. If you had one child with a PhD, the chance with another child will be born with th the ranges from 1.5 to 5% depending on the type of Ph. D. In the first child. If you have had two Children with th E, then the risk increases to 5 to 10% to have another child with a PhD. If the mother has a PhD, the risk her child to be born with CHD ranges from 2.5 to 18% with an average risk of 6.7%. If the father has a PhD, the risk her child to be born with th e ranges from 1.5 to 3%. Congenital heart defects involving obstructions to blood flow in the left side of the heart have a higher rate of re occurrence than other heart defects. If another child is born with a Ph. D, it could be a different type of defect than we've seen in the first child. Some heart defects are considered to have other Homo dominant inheritance, meaning that apparent with the decide has a 50% chance with each pregnancy to have a child with the same heart defect, and males and females are equally affected. Similarly, there's also a 50% chance that an offspring will not be affected. Complications with the genetic counts for our genetic specialist is encouraged for women with PhDs before becoming pregnant and families with CHD, either in a parent or offspring. Fetal echo choreography can be performed in the second trimester, about 18 to 22 weeks of pregnancy to determine the presence of major heart defects in the fetus. Life gets a lot more complicated when you have a baby with a congenital heart defect. Pregnancy is not something to take lightly on. We mothers and fathers have had the world removed from our eyes. We now know that not every pregnancy ends with a healthy baby. Where all we have to worry about is sex of the child, and how many fingers do they have? And that is why today's topic Rainbow Babies Pregnancy after losing a child to a congenital heart defect is so important to discuss this topic. Our guests they are Ashley Halligan and Sherri Turner. Hello, again is 29 Joe Oliver Robert Hell again. Three weeks ago, on May 12th 2014 when he was six months old, Oliver had total anomalous pulmonary venous return Ta PVR, which was not prenatally diagnosed all of the battle through to open heart surgeries, one stroke, three cardiac arrest and one respiratory. After all of this, they found out that Ali had h o. H or chemo schedule by pick lymph. Oh, Dios, psycho boy. I hope I said that right. It is really a mouthful. Now I know why they say H o h. This is an extremely rare bone marrow disorder. H l H has an 80% mortality rate. With this new diagnosis, Ashley and her husband had no other choice but to let Oliver go Actually, and her husband, Trevor, are planning to try for more Children after this summer. Before Oliver passed away, they had a full panel, a genetic testing done on him. They are still awaiting the results. Actually, hope is to spread all these story PhD and H l H awareness and to help families in the sea. I see you at the Children's Hospital of Pittsburgh. Welcome to the show. Ashley.

spk_4:   5:55
Hi there. How are you? I

spk_2:   5:57
am doing great. Wow. H o h h l h I had never heard of before. Yeah, too.

spk_4:   6:03
I had no idea. And I mean, sometimes it could be genetic, and sometimes it's acquired. I mean, the doctor saying that that they think it was acquired because I guess when your body kind of has all of these different issues, he has issues with his heart. And then after one of his arrest, he went into renal failure. So with all of that going on, it's kind of like your white blood cells going overto So instead of going back to neutral like it would if you or I were sex your life, let's go up. And then once you're done being sick to go back to neutral instead of that his always stays very, very high and started to eat away at his healthy red blood cells. So

spk_2:   6:43
it's like an auto immune disease. From what I was rewriting, ppd, a right. Very, very, very. In a way, you didn't really lose your child to a congenital heart. Defect it with all the complications involving the heart defect and this H l h Isn't that true? Board

spk_4:   7:02
of I mean, H L h is kind of the straw that broke the camel's back, also with ta PVR. One of the things that can happen is narrowing of the vein out into the lungs, which they can't do anything about surgically or in cath lab. So we also found out in that care conference when you found out that he had a chili. But there was also a narrowing out in the long No, they didn't prepare. It was still some diagnosis of the pulmonary vein out there that they you know, there's nothing that they can d'oh.

spk_2:   7:33
And that's a good point, because for our listeners who are listening to the show, the anatomy gets very complicated, and it's amazing how much we parents can learn. But the pulmonary veins are different than the pulmonary arteries, and with the pulmonary arteries, can go in and use a balloon to try and open her up. Or they can put sense in them. But when we're talking about the pulmonary veins, that's a whole different story, and it breaks more complicated for them to try and work with any video. Teeny tiny baby And those veins, which are, I believe, much smaller than what

spk_4:   8:08
the pulmonary artery is, right? Extremely, extremely. And I mean, if they tried to balloon your beans, then it can cause the vein behind it. Donald collect, which you know, Would that be no good?

spk_2:   8:23
Right? It gets so complicated. So really run in your family, Actually. Well, I know that I

spk_4:   8:31
know of, I'm actually adopted, so it's kind of hard to say From what I know. No, they do not run in my family. That's the easiest way to do it. But that's why for our next rainbow baby, we're gonna be working very closely with genetic,

spk_2:   8:46
right? Right. And that's good advice. But I discovered on the Children's Hospital, Philadelphia website Is that what they recommend? That you work with geneticist? So you on Lee lost all over three weeks ago, which is so raw for me brought tears to my eyes when I saw that. So when did you decide that you were gonna go ahead and have another baby?

spk_4:   9:09
I don't think there was ever really a doubt that we weren't going to have more Children. Even when you're sitting in the C I c u On our darkest days, I think that my husband and I are just committed to having a family and feel like that bond with our Children. PhD got in the way of it, but where I kind of had strong and I really wanted to have that family so willing to do what we have to do to get there.

spk_2:   9:34
I hear you. It was really challenging for me when we discovered Alex's heart defect like your son. He was not diagnosed prenatally and trade and find out until after he was born. And my husband and I had always said, ever since we started talking about having a family that we wanted to Children and that was it, we wanted to have to. And so after Alex heart defect with diagnosis, very serious hypoplastic left heart syndrome. The doctor gave us only 5% chance for Alex to survive. And at that time, to my deprived, both of Alex's doctor to surgeon and his cardiologists recommended that we have another baby way only wanted to know exactly whether Alex made it or not. We had our too much holder of a 31 by the time I had Alex, and it's me five years to get pregnant the first time in three years to get pregnant the second time. So that would have put me closer to 40 and I just I knew that we wouldn't have another child. So have you and your husband already decided We want to have two kids. Five kids

spk_4:   10:43
are whatever we actually said to, However, I think I don't know. My mind has changed a little bit. I mean, I always said the whole process, that Children's Hospital Pittsburgh If God wants me to have another baby with a Ph. D, then that's what happened to the Carter in our favor that we'll have a healthy rainbow baby, then that's what's gonna happen either way. I'm committed to starting our family and growing our family.

spk_2:   11:13
I'm excited for you and I will keep it touch with me and let me know what you think. We're Facebook friends because you keep up with you that way. The most difficult thing about wanting to have another baby at this point in your life, with the death of all over still so fresh and with the concern that the hoh was not required, but rather congenital. Well, the thing was a

spk_4:   11:38
challenge to that. It's a recessive gene, so even though our future Children could possess that treat, it's extremely rare for it to come to light is my understanding all of this with a chili is very new to us. You probably only found out about a month ago, but I'd say probably the most difficult thing right now is just being happy to be pregnant. I haven't had so much love for Oliver that I'm really afraid of. You have heart healthy, baby, how you're going to feel about that baby versus how I felt with all her, because it was unspeakable love that I I had never experienced in my life. And I have friends who have had Children. They'll love that you have for your Children. It's different. You don't technically have a child. And now that I have been especially with someone, it's kind of like OK, but can I feel the same way with another child? But is this possible? People tell you? Guessed, Of course, Of course, you love all of your Children, but just the things that we went through on the things that we So all of that goes during the night. One of his respiratory arrest was literally right before my eyes and I don't know. That's probably my biggest feel right now is being If I will have that love against that much love again.

spk_2:   13:08
I know I felt just like you did. And it did take me forever to get pregnant. It seemed like forever. Five years isn't forever, but it felt like forever for me.

spk_4:   13:16
Oh, my very quick

spk_2:   13:18
was it to get pregnant. And it's just like you said I was a teacher, so I worked with Children all the time, and I even had a student asked me, Don't you wanna have a baby on? They just have no idea how that hurt my heart when they would ask, mate, when we were trying so hard to have a baby and I thought that the love I had for my students could not be surpassed because I adored my Children. And listen, I'm calling them my Children. Wait. Go back to school after hours because I wanted a residential school where Children were hard of hearing and death and I would pick up my dog and bring her back to the school so Casey could be with my students. And I didn't have believe Casey all day. And the kids loved seeing Casey because they weren't allowed to have dogs in the cottages where they lived. And so I couldn't imagine loving my own child more than I loved my students. I just adored my students that you know what? It was greater, and And when I had Alex and I got pregnant with Alex, remember thinking the same thing. Well, well, will I be able to love Alex as much as I love Joey because my heart just swells with so much love for Joey and it's amazing. But I was lucky because my first troubled heart healthy. And it was Alex, my second child, who had a heart defect. And so we'll be talking to Sherry a little bit later, and we'll be able to ask her that question. I haven't experienced that myself, but I can tell you, just from one child to the next. Yes, it almost feels like your heart capacity to love just multiplied with number of Children you have, and the older that the older you get, it's not just your Children are for me, my students and that my Children. But your heart just has a way of getting bigger and bigger. And now all my friends in the heart world I love all their Children Thio God, that really caught each other's achievements. And we cry with each other when things are going well. And it's amazing how much love you can half the people that we've never met face to face. But who you come to care about because we have this common bond. So I'm gonna ask you this question. And I know that Oliver has only been gone for three weeks, so it may not be something you've thought about. But if you become pregnant again and have another baby, what do you think you'll tell that child about Oliver? Oh,

spk_4:   15:42
God, I don't know. I mean, obviously that's something I think about. I mean, I guess it would all depend on the age when you would probably tell that child about Oliver, you know, I mean, like, I mean, I guess I would wonder, and I'll probably have to pick Sherry's Bring about this like one is a good time to tell them because I know working with the child life specialist Children that when they would talk to siblings, they would say all of us sick, like my friend and all of their sick. But it's not a type of sickness that you can catch. You're like, Oh, well, if I don't see Oliver, am I

spk_2:   16:20
going to get sick? No, no,

spk_4:   16:21
no, no. You won't get his type of sick. But then with a sibling, that's not always the

spk_2:   16:26
case. Do you know what I mean? Like so I don't know. I don't

spk_4:   16:30
know. I'm sure that's probably my parents Felt one other. You know, they said when the time comes, how are you gonna tell? Actually, she's a pulpit. And honestly, I don't remember how they told me, but I'm fine

spk_2:   16:41
now. It's almost like you feel like you always knew you were adopted. Yeah, yeah, yeah, it's just part of who you were. So I'm wondering. I imagine you have pictures of Oliver in your house.

spk_4:   16:56
Oh, I'm not hanging up anymore because it's really law to see pictures. But, I mean, I still have him on my phone and, you know, we have are always strong page on Facebook. And but, I mean, I think right now, like last night, we literally just got pictures. We did like a double ceremony, um, on mother's day for him. And so I saw some of those pictures, and I was flipping through them last night and noticed myself getting choked up. But if you'd asked me a week ago to look at those pictures, I would have been a ball in that. Oh, yeah, kind of like how everyone tells me it takes time like you'll never stop hurting. But you'll be able, like I'm looking forward to the day when I can look at the pictures and just smile and not be extremely sad, you know? And I feel like I'm getting there and just trying to keep myself busy. And, you know, people need allies and spread awareness because I can, because you never think you're pregnant, that it could happen to you. I know they don't want anyone else but you or your friends.

spk_2:   18:07
Yeah, it's weird because I didn't even really think about Children. Have a heart defect, is when I was pregnant. No, you know that my Children, maybe being deaf worked with that kid you didn't even ask me. What would you do if you have a death, baby? And I was like, Well, I'll love him or her, just like if they were hearing, You know, that was a nice idea, but nobody said to me, What would you do if you have a baby with a heart defect? And that's the most common birth defect, right? I mean, think

spk_4:   18:37
about lightning leukemia, no being blind or you go down. And but

spk_2:   18:46
now you know how many D'oh! Yeah, but you don't think I see cheese? Nope. And I had a student who had cerebral palsy who were deaf, blind to have diabetes, and those things were kind of salient and on my mind, because I was dealing with Children who had those issues. My knowledge. None of my students had a heart defect, Right? And no

spk_4:   19:09
old when you're pregnant, that Oh, well, you can do like the amnio and that for the down syndrome treat. But then, as in that Children, they said the baby's fetal echocardiogram, something like what I had no idea about,

spk_2:   19:24
Right? And I was pregnant while 20 years ago now. So, yeah, that wasn't even really offered. Back when I was pretty important, I'd already had one heart healthy child. There was no reason to think that Alex would have a problem. Yeah, but like I said in my intro, the wool is removed from my eyes and all of a sudden we know, Oh my goodness, other things can go wrong. And like I said, I knew kids could be born with Linus, cerebral palsy or so many other things. Final defeat. I even have a child that I worked with when I was a student, teaching who is deaf with Runa bifida. And when it came time for the M. E o. Like you're saying, I said, You know what? If I have a baby with down syndrome or if I have a baby with spina bifida, I will love that baby just as much. I am not going to abort a baby because of those. So I didn't even do it. I didn't even

spk_4:   20:16
know my name you, either.

spk_2:   20:19
I kind of figured that God would give me a baby and give me the strength to deal with whatever I had to deal with. And I'm terrified Children who had Down Syndrome, spina bifida and I love E i e Children not being there because their parents have decided to abort them. That wasn't even really an option with me. I'm happy that you are already planning on having another baby because a baby feels your life in a way that nothing else can. Even though I have 33 babies, Dominance and Pancho and I love my dog very much. They're all rescue dogs. It's not the same thing. Is having a baby? Exactly. Exactly. Your furry babies are different, so I'm wide round. You mentioned something about it, possibly being genetics. Are you working with a geneticist now in preparation for getting pregnant?

spk_4:   21:16
Well, right now, we're kind of like in the beginning of all of it, because they did do a full panel on all there. And then they also took a panel for Trevor and I. So I think within the next couple weeks will be sitting down and having another care conference that Children's Hospital of Pittsburgh are our whole

spk_3:   21:34
team as well as Internet account to see if any of

spk_4:   21:41
it was genetic and also at that point will also get his autopsy report to see if anything else is underlying. Okay, so now we're just kind of waiting for that. And then only time

spk_2:   21:52
will tell, I guess. Well, I have so enjoyed talking to you, and I know we'll be talking a lot more later. I need to go to a commercial break. So you actually so much for sharing with us. It is time. Oh, I loved it. Don't leave listeners because we have another mother who will be sharing her story with us. Find out how she dealt with the grief of losing her son, the hyper plastic left heart syndrome. He had experience not one or two rainbow babies, but three. And find out how her rainbow babies are doing and whether or not she would do it all over again. When we return

spk_5:   22:28
Hot into Street, we're offering a mechanical hot. And he said, now that I've had enough to give it to someone who's worthy My father promised me a golden dressed world and held my hand and asked me where I wanted to go. Whatever tried for conflict that we experienced in our long career together was always healed by humor. Heart to heart with Michael, please join us every Thursday at noon, Eastern as we talked with people from around the world who have experienced those most difficult moments forever by the Baby Blue Sound collective. I think what I love so much about this CD is that some of the songs were inspired by the patient's many listeners will understand many of the different songs and what they've been inspired. Our new album will be available on iTunes. Amazon dot com. Spotify. I love the fact that the proceeds from this CD are actually going to help those with congenital heart defects. MUSIC Home Tonight forever Look,

spk_2:   23:39
welcome back to our show heart to Heart with an a show for the congenital heart defect community. Today we're talking with bereaved parents Ashley Elegant and Sherri Turner, the Rainbow Babies Babies born after losing a child. We just finished talking with Ashley about her experience of losing Oliver, his congenital heart defect, a TVR and her desire to get pregnant again. And now we will turn our attention to Sherri Turner. Harry Turner is 44 lost her first born son, Thomas William Turner, 16 years ago. A hypoplastic left heart syndrome when he was 10 days after her death in 1997 Cherry organized the first congenital heart defect, er CHD Awareness Day in Massachusetts. On February 14th 2000 A Children's Hospital of Boston. After having organized several annual CHD awareness days in Massachusetts, she took a long hiatus to continue her family. She was beginning a nonprofit called the Massachusetts Her Coalition. When her second child, Alison Nicole Turner, was born in 1999. Christopher followed in 2000 and three and Daniel in 2000 and five. Raising her young family has been her focus for the last several years. Actually, it's been quite a few years. I'd love to see her pictures of her Children on Facebook. They're so beautiful in there. They're getting so big. She has been such a wonderful example of how you can lose the child to a congenital heart defect and yet still go on to have three healthy Children. Harry. So thank you for coming on heart to heart with Anna Sherry. I'm excited to talk to you again. I'm excited, too. Well, this is kind of a bittersweet show, because we're having to address the fact that you and Ashley, and unfortunately, many many people have lost the chattel heart defect. But hopefully it's sweet because we're talking about hopefully having a rainbow baby. And so I want to ask you first of all, how are your rainbow babies doing? And I know they're not babies anymore.

spk_3:   25:43
They're doing very well. Alison 14. She just an internship at the Museum of Science in Boston, and Christopher is enjoying a little league. He's 10 and Daniel is eight and also enjoys league. They're having a good time with a season this year, so I'm proud of all three of them.

spk_2:   26:03
And they were so beautiful. I love the fact that your coffin posting photos of them and showing us what they're doing it makes it fun. I feel like even though I'm so many miles away that I can still be part of their lives and they don't even remember me. Well, I'm glad you're enjoying

spk_3:   26:21
it, though, because that was really intended purpose when I started posting about them because of that family and friends that are spread all over the place and don't get the come to games or see things they're doing. And it's nice that they get, too, if they want to keep up on what you're doing.

spk_2:   26:39
Sherry, I know it was really difficult losing Thomas. He was your first born child. So how long after you lost Thomas? Did you decide that she wanted to have another baby

spk_3:   26:51
for me? It was almost immediately before I had Thomas. I had initially wanted to have six Children, and, uh, I couldn't see my life without you in it for me can make everything so much better. And even though what we went through with Thomas was the horrible tragedy and there were a lot of things that made it complicated to have more kids. Yeah, I never doubted that I wanted more Children.

spk_2:   27:18
Children. Oh, my gosh, Sherry, that was my

spk_3:   27:24
initial plan changed. But, you know, that was the initial plan. I

spk_2:   27:28
think that you have done awesome with the four that you have had. And so let me ask you, because we both were pregnant over a decade ago. And so things were a little bit different when you decided to have another baby after losing Thomas. Did you take any special precautions? What did you see? A specialist?

spk_3:   27:47
I did. I had a high risk pregnancy obstetrician and I was also fall by midwives and Alice had a level two echocardiogram while in utero. And I also have an echocardiogram donor after she was born, which I found out later was kind of not productive, because the anatomy of the heart is different on a newborn than it changes over the course of two weeks or so. That one was probably a waste of time to have the echocardiogram for her when she was a newborn, but in utero. It was definitely helpful to know that she did indeed have four chambers to her heart, and it gave me teeth online anyway, after her birth. Have it. So in that way, it wasn't a waste of time. I also had chronic. I forget how I pronounce a CVS testing done chorionic villus sampling, I think, is what it's called. And it was a procedure that was supposed to tell me if they were going to be any more problems with down syndrome. Are there any other issues? I did have that done, and in looking back, I probably would not have had it done if I had it to do over again, because it does increase the risk of you miss carrying a child and the information that we got out of it proved to be unreliable as we were told that there was a pretty good chance of Allison was gonna have down syndrome when she was born on.

spk_2:   29:16
Really? I never Yeah, very.

spk_3:   29:19
Yeah, they told us that that was a strong possibility. And, of course she was born, and there's no trace of Down syndrome at all with her. It made us more nervous than we needed to be. We're already keyed up about having another baby and then to be told that that was probably pretty strong possibility. You worry don't whole rest of the pregnancy, of course, especially since Children who have down syndrome very often have heart defect.

spk_2:   29:47
That's right person, I think, Or maybe even higher than that. They usually, but it's not usually a severe Rachel HS. It's fairly uncommon for a baby with down syndrome have H late Joe. Well, I didn't

spk_3:   29:59
know that, but you know, just any hard defected all. I mean, it's pretty overwhelming when you first I hear that your child has a heart defect because it isn't something that you hear about which is odd because it's such a high prevalence of babies being born with a heart defect. Last night it was like one in every 100 babies, something like that, and, you know, for something that's that frequent, not hear about it. I mean, it never even crossed my mind to ask about it during pregnancy when I was pregnant, after I had had him. When we went through what we went through, I of course, inquired about heart defects with my subsequent Children. And, like I was told with Alison that she might have Down syndrome, and that brought a certain risk with it for heart defects. But it was different. Vivian Report. I couldn't see myself a boarding, and Thomas has a lot to do with that. I saw him fight so hard for his life. I couldn't bring myself to terminated pregnancy. I don't think I mean, everybody has their own path, and they have their own reasons for doing what they do. And I'm not trying to pass judgment on anybody about what their decisions are, but for me, after seeing how sick Thomas Woz and how hard he fought to live me, he had a lot of problems. He had the hyper classic left heart syndrome. He also had pulmonary vein,

spk_2:   31:32
just like what actually was telling us about her. Yeah. Yes. And that along with her? Yes. Yes,

spk_3:   31:44
More than I realized when you were talking with her. What? Thomas is situation. He was oxygen deprived from the very get go, and he couldn't recover. So the doctors had told us that they didn't even expect him to live beyond a few hours after delivery. So the fact that he lived for 10 days was a huge testament to the fact that he wanted to live.

spk_2:   32:09
And that was a gift

spk_3:   32:10
for you. Yes, it was very much a gift. And so any other child that I had after him, I thought, deserved every bit as much of a fighting chance is he got At least

spk_2:   32:25
let me ask you, Sherry, you had Thomas who had major problem. Then you had Alison, and they thought she had problems. That the natural she was born totally normal and healthy. So when you've got pregnant for the third time, were you still considered a high risk pregnancy?

spk_3:   32:43
Yes. Every pregnancy after that has considered high risk.

spk_2:   32:46
But you went through the same thing with the boys having an echocardiogram done. Yeah, you know, I mean,

spk_3:   32:53
see, I did have Yes, I often not to do the CVS testing again. I wouldn't want to be led into thinking that was going to be a problem when there really wasn't so I didn't know that have done. Didn't seem to be very reliable after my experience with Alison. But I did have the echo's done in. I did have a lot of ultrasound done while I was pregnant, and each one was a reassurance to me, you know, because they would do the ultrasound or the echo, and then they would talk to me about it afterwards, just to sort of make sure I understood everything was okay.

spk_2:   33:30
Marina. And it must have been very reassuring, though, to see those fetal echoes and to see that his heart being Daniel's heart and Christopher Hart we're developing normally.

spk_3:   33:40
Yes, very much so. I got pretty wound up before each time I had a test, and then afterwards it was a huge relief. I almost felt like throwing a party.

spk_2:   33:52
I know I can just imagine what it's like because you know what? I don't know what you were told, but I was told when we asked about what caused Alex's heart defect, they said, It's just a fluke of nature. We don't know what caused it. You know, her defects don't run in your family. It's just a fluke of nature. And I would think that maybe when you had three subsequent healthy Children that she would believe Well, maybe that was just a fluke. Your experience, anything like that. Well, they did tell me

spk_3:   34:23
it was a fluke of nature, but no, honestly, I've never been able to bring myself to believe that for me, because when I was pregnant with Thomas, I thought I had the flu and by took medication for it. Never always thought that might have had something to do with it. And I've been told, no, that's not true that none of that would have harmed him. But it's just always been in the back of my head because they can't give me an answer is the one did, cause if they can only tell me what they think didn't cause I. So until somebody could come forward and give me a definitive answer is the one happened. I'll always have a question in the back of my mind. But would that said, It's not like I planned it. I didn't know. Okay,

spk_2:   35:10
well, let's move on to another question. And that is I know that you have certain rituals to remember Thomas Frieder and I was part of one of those one year when you flew me in to talk to the people and to get a heart defect awareness event. But I know that you have some other rituals. Can you tell us what rituals you have that relates to Thomas? Sure. Well, every

spk_3:   35:32
year on the birthday, we visit his grave and we bring flowers and we do a balloon release. Help the kids be part of remembering him at Christmas time. We purchased a Christmas ornament for the tree every year of his memory. And around February 14th which, as you know, is the Awareness Day. We usually bring things to the TV actress I C. U unit at Boston Children's Hospital. We've had for the last two or three years. We've had my Children. Schools have all participated in making Valentine cards for the kids that are in the I. C U unit, and we usually try to bring something for the staff. One year we brought muffins and we need land you into their badges. We this past year purchase gift cards to Goto along Pan because they're at the hospital and subway little things to help them here that their hard work is appreciated. I don't know what anybody else has experienced was while they were there, but, well, we were there. The fair was incredible. They were always working, always held, always compassionate. And I felt like they not only addressed the medical needs of Thomas, but they remembered that he was a baby. And you know that he needed different attention than on older child or an adult would need. And I really thought that well, a lot to their abilities of compassionate human being, never mind talented staff and doctors and nurses.

spk_2:   37:18
Absolutely, yeah, And when when you have a child who get older and has multiple surgeries and it's fortunate enough to go back to the same hospital and have the same staff, people become part of your family. I mean, it is amazing how close you can get these nurses and the doctors. But they're following your child and providing lifesaving techniques multiple times throughout the child's life, and it really is amazing how close you become to them. I love all these different activity that you do and what I really love. It's when you put the photos on Facebook, but it is that they do. So I knew that you had done multiple things over the years, and it's very heartwarming to me that you do so much contaminated memory. And I'm gonna have you talk with actually in just a minute when we go into my portion of our show. But one last question for you, Sherry. And that is what advice would you give to a mother who has lost a child to a congenital heart defect regarding thing another

spk_3:   38:17
baby? Well, I think it's important to take time degrees before you go to have another child, and only you know how much time you need. Don't let anybody else tell you how much time you need, but whatever amount on the time that is, it's important to give yourself permission to grieve. Even while you're pregnant, there's gonna be a lot of miles skills that you hit through your subsequent pregnancy that they're going to remind you of things that you have with your first pregnancy with your first child for the child you lost. And it's okay to be upset of all those things, and it's okay. Fully feel that. But with that said, it's also important to remember the people that are living to um, I stepped back from some of my efforts on PhD Awareness Day because I started realizing it wasn't giving the same energy to my Children that I had had subsequently. And I think it's just important that you take time to celebrate those things as well and allow yourself to feel the joy of having a new child right and not feel guilty that you are starting to feel joy even though you did have a big loss.

spk_2:   39:35
I mean, it's such a tremendous loss, and I have spoken to so many bereaved friends who told me that they wondered if they'd ever really smile again or really laugh again, and that when they did have the rainbow baby, it brought so much joy into their lives and sometimes they felt guilty for being happy for having the new baby because they never wanted to forget the baby that they lost. And you can

spk_3:   40:02
remember your child even through your other child. I don't know if that makes sense, but, um, no two Children of the same, but they are related. They're brother and sister or brother and brother, you know, they are related. And you can You can kind of take joy in the fact that knowing that they do live on in a way through their siblings and you don't have to feel guilty about that. You know, they're their own person, of course, but they were gonna be elements of them that remind you of your other Children.

spk_2:   40:41
Yeah, I think that's one of the beautiful things about siblings is that nobody is ever closer to another human being than you are to your sibling. And that is because we do share genetic material, does the same. You know, we have the same mother and father, and that just makes it so very close. And of course, we're gonna have qualities. You may not think so. My sister and I seem to be as different as night and day, yet there's no denying the fact that we're sisters look alike, and we actually laugh alike. My son, Alex told me one time after he had spoken to my sister on the telephone. He said, Mommy and Christy lasts just like you do. I never noticed before, but yeah, we've definitely share things that you don't share with anybody else. So I enjoyed working with you, Sherry. But I'm gonna need to take a quick commercial break. And then when I get back, we will talk to, actually, and we have a couple of people in the chat room. Nobody's asked the question yet, but I know that actually has a question for you, Sherry. So we're going for a short break and then we come back. Then we'll talk all three of us together, which would be a lot of fun. Sounds great.

spk_6:   41:47
Anna Dworsky has spoken around the world at congenital heart defect events, and she is available as a key note or guest speaker. For your event. Go to heart to heart with anna dot com to learn more about books thing. Anna, for your event, you can also find out more about the radio program keep up to date with CHD Resource is that information about advocacy groups as well as read Ana's Weakly plug. Anna wants you to stay well connected and participate in the CHP community. Visit heart to heart with anna dot com. Today

spk_0:   42:25
you

spk_1:   42:26
are listening to heart to heart with Anna. If you have a question or comment that you would like addressed on our show, please send an email to Anna Gorski at Anna at heart to heart with anna dot com. That's Anna at heart to heart with anna dot com Now back to heart to heart with

spk_2:   42:47
a heart to heart with an a show for the congenital heart defect community. Today we're talking with bereaved parents Ashley Halligan and Sherri Turner. We've heard from Ashley about how a parent can lose a baby to a congenital heart defect but still want to have another baby. And we've heard from Sherri Turner about losing a child to have plastic left heart syndrome and then going on to have three rainbow babies. The first of all, I'd like to start by thanking Ashley and Cherie for coming on the show today and talking about such an important issue. I know there are so many women that will be able to relate to the story that you shared and who will gain strength from what you shared with us today. So thank you, Ashley and Sherry. Thank you. Thank you very much. Well, actually, tell again. I've been told I have you on the phone and in the chat room at the same time. Love is the hardest thing for you to do. Right after you lost Thomas Sherry.

spk_3:   43:42
The hardest thing for me to do right after I lost tallest it was probably the hardest for me to be around other babies. I felt like they were everywhere. And I just couldn't bear to be around Children because I kept thinking, you know, I wanted my baby so much. Why wasn't I allowed to have our keep my baby? And there are a lot of Children out in the world who are abused and not taking care of, and yet they're allowed to remain in those situations. So it was very, very hard for me to endure that.

spk_2:   44:20
How long did it take you after you lost Thomas before going to Wal Mart, McDonald's or any place where you tend to see a lot of babies or Children. How long did it take you before you could go in those places without wanting to run out of there crying? Probably three months, I'd say

spk_3:   44:39
three months. I went in those places before then, but I couldn't handle going without crying for probably about three months. Well, yeah, the day of my son's burial relative brought a baby to the house and I couldn't bear to be in the same room

spk_2:   44:59
with So are Jerry. Do you think that having the rainbow baby that you did Did that help you to get over that tremendous feeling of loss where you couldn't even look at another baby without feeling that anguish? It did help

spk_3:   45:15
me. It didn't help me in that for me. I needed Children to be in my life. And knowing that I actually could have a healthy baby went a long way to helping me cope. It didn't make the loss of Thomas any less. Of course, that still hurt tremendously. But being able to have a baby that could survive and could receive the love that we had to give them that went a long way to sort of opening me up a little bit more and, you know, returning me to a sense of more optimism that I had. After I lost all this.

spk_2:   45:56
I'm gonna ask you one more question, and then we're gonna have to and the show. How did you tell your other Children about Thomas? Well, I told him

spk_3:   46:06
slowly, and when birthdays rose and with safety Awareness Day came around, we would talk about it and we still do often on refer to him. I had to take, like, Hughes from my Children and see what they were ready to hear. Sometimes they were very interested and asked a lot of questions. And other times, if you mention them, that all they would change the subject right away. And, um, I would take that as a cue that they weren't ready to handle it. How

spk_2:   46:36
old were they when you first let them? Now that they had a brother,

spk_3:   46:41
Alison was probably, I don't know, two, maybe a little younger than that. But I say around two when she actively knew that she had a brother and it was really more for her about the birthday cake and the release in the balloon was a big deal to her that is grave site, and I don't know for sure that she connected. That was having a brother. But we had pictures of him. And, you know, I would encourage people not to put away the pictures unless they really feel like they have to, because that's sort of a natural way to talk about it, because they're gonna have who who is that? We kept our pictures of Thomas up around the house, just felt like the right thing for us to do. And eventually our daughter started asking us who that was, and it gave us a natural diving off point to talk to her about that your brother And you know, he had a boo boo on his heart and the doctors didn't know how to fix it and etcetera, etcetera. But we would keep it very simple and sometimes only a sentence or two, depending on where she was at. But I always tried to be open and honest about the questions. I didn't shy away from anything. I just tried to keep it, whatever she asked, answer that and not elaborate too much on what she asked

spk_2:   48:05
Ashley, Do you have any other questions you'd like to add, Sherry. Oh, God. Well, I think you have

spk_4:   48:10
the reception that I I was wondering is how you tell them and tell them naturally, in a sense to be if you don't want Your mother told them to be scared that they're gonna have a boo boo. No, I mean right now, I think it's so fresh for me right now. I'm just china. Figure out howto get normal. Your

spk_3:   48:33
normal is gonna be new, right? It's not gonna be the same as it ever waas now and as far as your other Children being scared that they're gonna have a boo boo. It's really kind of a more straightforward explanation than like some parents have in the past told the Children that brother sister went to sleep. You don't want to tell him that congenital heart defect is basically an injury? No. My way of thinking. So it helps them to understand it in basic terms. They ask you if they're gonna have a boo boo. Well, we've had you checked out by a doctor, and the doctor says you don't. So you're okay again? You mean individual situations gonna vary, but that's the way it went for us. And there's a great book that offer the Maria Trevi put out about talking with kids in the name of the book is talking with Children about loss, words, strategies and wisdom to help Children cope with death. And we picked that book up and read that and talk with Alison about that a little bit as needed, so that might help you.

spk_2:   49:45
Yeah. I don't get that information from you, Sherry, and I'll put that on our website so that other people have access to that as well. I wanted a quickly it, even though I had only one more question. And do you? Thomas is an angel. I don't refer to him that way because I have a very

spk_3:   50:02
specific belief about what angels are. And all that me and I see him is distinctly separate than one of Angel is. It doesn't offend me or anything if somebody called him that. But it's just not how I think about him.

spk_2:   50:16
Thank you, Sherry, you know, and I know all moms were different, and I see Mom who signed and do signature, and they say they're an angel, Mommy, or they refer to their maybe to have died as angel babies. And so I was curious. I know that something that varies from person to person, that is just a serious cherry. He did or not. It seems like your Children have adapted so beautifully and they don't seem fearful. They seem to just accept that they did have a brother and none of them got to meet Thomas, so it must seem like such a almost intangible thing to them in some

spk_3:   50:53
ways, very much so. And sometimes I think it means a lot more to me that they knew about it than it does to them right now. But I've got in their heads, so I can't really say that definitively. But I think it's an abstract concept of them At this point

spk_2:   51:09
in your life. I think it will mean something to them. When they decide to start their own families, they know that you had that loss, and like I said, once again, it kind of removed the world from your eyes that just know that these kinds of things can happen in families, and it's concerning now. I have two Children who are adults, Alex, 19. He'll be 20 in August, and Joey, 22 will be 23 in August, and neither one of them are married. Neither one of them are talking about starting a family yet, but I know that when they do help, I won't be a nervous family. But I know I will be nervous. Yeah, but I'm going to be anxious until I know that my daughter in law has had an echo and they concede before chambers of the heart, because Alex, just like Thomas, had a left sided heart problem. And we know that there's a higher incidence of recurrence in families that have that left sided heart defects. I want to end on a positive note, and the positive news is that Rainbow babies do exist. We have different annual to remind us that there can be a rainbow after the storm. I loved the term Rainbow Babies soon as I found out about that and I just found out about that recently and I thought, Wow, that is such a beautiful term for these Children who bring such joy into our lives after experiencing such tremendous devastating loss. I want to thank you ladies for talking to me today about Rainbow Babies and I hope to do a follow up show. Maybe next year with Ashley telling us about her rainbow baby, You long to get pregnant in it. You have your own rainbow baby to tell us about We could do a reunion show. That would be so much fun. Thanks again for listening. We know that congenital heart touch people all over the globe. Remember, my friends, you're not thank

spk_6:   52:59
you again for joining us this week Way Hope you've been inspired and empowered to become an advocate for the congenital heart defect community. Heart to heart With Anna with your host Anna Gorsky can be heard every Tuesday at 12 noon Eastern time. We'll talk again next week.